II 

118TH CONGRESS 

2D SESSION S. 5226 

To establish a program to address sickle cell disease and other heritable 

hemoglobinopathies. 

IN THE SENATE OF THE UNITED STATES 

SEPTEMBER 25, 2024 

Mr. VAN HOLLEN (for himself and Mr. BOOKER) introduced the following bill; 

which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 

A BILL 

To establish a program to address sickle cell disease and 

other heritable hemoglobinopathies. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Sickle Cell Disease 

5 Treatment Centers Act of 2024’’. 


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1 SEC. 2. ESTABLISHMENT OF SICKLE CELL DISEASE AND 

2 OTHER HERITABLE HEMOGLOBINOPATHIES 

3 TREATMENT CENTERS. 

4 Subpart I of part D of title III of the Public Health 

5 Service Act (42 U.S.C. 254b et seq.) is amended by insert6 ing after section 330P (42 U.S.C. 254c–22) the following: 

7 ‘‘SEC. 330Q. SICKLE CELL DISEASE AND OTHER HERITABLE 

8 HEMOGLOBINOPATHIES TREATMENT CEN9 TERS. 

10 ‘‘(a) DEFINITIONS.—In this section: 

11 ‘‘(1) COMMUNITY-BASED ORGANIZATION.—The 

12 term ‘community-based organization’ means a com13 munity-based nonprofit organization. 

14 ‘‘(2) HUB-AND-SPOKE NETWORK.—The term 

15 ‘hub-and-spoke network’ means a system for delivery 

16 of health care services— 

17 ‘‘(A) in which a medical hub identifies and 

18 manages a medical spoke or network of spokes, 

19 to provide comprehensive sickle cell disease 

20 care; 

21 ‘‘(B) in which such entities serving as 

22 spokes— 

23 ‘‘(i) may provide sickle cell disease 

24 care services; and 


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1 ‘‘(ii) may increase services over time 

2 to meet the definition of medical hubs and 

3 connect with new spokes; and 

4 ‘‘(C) in which the medical hub and spoke 

5 has a partnership with one or more community6 based organizations to extend services and out7 reach to the sickle cell disease community. 

8 ‘‘(3) MEDICAL HUB.—The term ‘medical hub’ 

9 means a hospital, clinic, or university health center 

10 that— 

11 ‘‘(A) provides comprehensive sickle cell dis12 ease treatment, which may include medical and 

13 surgical treatment, such as provision of stem 

14 cell transplants and cell and gene therapies, an 

15 outpatient treatment clinic led by a board-cer16 tified hematologist, infusion capability, tele17 health capability, genetic counseling, access to 

18 home care, and a pharmacy; 

19 ‘‘(B) has experience serving individuals liv20 ing with sickle cell disease or other 

21 hemoglobinopathies; 

22 ‘‘(C) follows consensus-based clinical prac23 tice guidelines; and 


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1 ‘‘(D) may be a grantee or coordinate with 

2 grantees of the Sickle Cell Disease Treatment 

3 Demonstration Program under section 1106(b). 

4 ‘‘(4) SPOKE.—The term ‘spoke’ means an enti5 ty— 

6 ‘‘(A) that provides health care services, in7 cluding— 

8 ‘‘(i) a Federally-qualified health cen9 ter, as defined in section 1905(l)(2)(B) of 

10 the Social Security Act; 

11 ‘‘(ii) a hospital, clinic, or university 

12 health center that provides clinical care 

13 and has telehealth capability; 

14 ‘‘(iii) a primary care provider; 

15 ‘‘(iv) an outpatient treatment clinic; 

16 ‘‘(v) an infusion center; or 

17 ‘‘(vi) other health care providers; 

18 ‘‘(B) that has at least 1 collaborative 

19 agreement with a medical hub and one or more 

20 community-based organization; and 

21 ‘‘(C) that incorporates a community health 

22 worker into the care team. 

23 ‘‘(b) PROGRAM ESTABLISHED.—The Secretary shall 

24 award grants to eligible entities to establish treatment 

25 centers using a hub-and-spoke framework (referred to in 


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1 this section as ‘Sickle Cell Disease Treatment Centers’), 

2 for the purposes of— 

3 ‘‘(1) promoting access to coordinated, lifelong 

4 health care for all patients with sickle cell disease; 

5 ‘‘(2) providing support to establish integrated 

6 health care teams for patients with sickle cell disease 

7 over a patient’s lifetime; 

8 ‘‘(3) improving the health and well-being of 

9 children, youth, and adults with sickle cell disease; 

10 ‘‘(4) improving the pediatric-to-adult health 

11 care transition; 

12 ‘‘(5) collecting and contributing clinical data 

13 from States participating in the Sickle Cell Data 

14 Collection program of the Centers for Disease Con15 trol and Prevention, including the collection of 

16 health outcomes and associated complications re17 ported pursuant to such program; 

18 ‘‘(6) ensuring that reporting with respect to 

19 sickle cell disease includes reporting on all patients 

20 with sickle cell disease, including migrating and for21 eign-born patients; and 

22 ‘‘(7) conducting significant public health aware23 ness and education activities with respect to sickle 

24 cell disease and sickle cell trait. 


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1 ‘‘(c) ELIGIBLE ENTITY.—The term ‘eligible entity’ 

2 means any entity that is comprised of— 

3 ‘‘(1) a hub-and-spoke network that includes— 

4 ‘‘(A) a medical hub that is a hospital, clin5 ic, or university health center; and 

6 ‘‘(B) at least 1 spoke working in partner7 ship with the medical hub; and 

8 ‘‘(2) at least 1 community-based nonprofit or9 ganization working in a partnership with the hub10 and-spoke network. 

11 ‘‘(d) USE OF FUNDS BY ELIGIBLE ENTITIES.—An 

12 eligible entity shall use grant funds received under this 

13 section as follows: 

14 ‘‘(1) MEDICAL HUB.—The medical hub of the 

15 eligible entity shall carry out the following: 

16 ‘‘(A) Operating and administrating costs of 

17 operating a hub-and-spoke framework. 

18 ‘‘(B) Complying with consensus-based sick19 le cell disease treatment guidelines, as identified 

20 by the Secretary. 

21 ‘‘(C) Educating health care providers on 

22 sickle cell disease treatment standards and pro23 tocols. 

24 ‘‘(D) Providing integrated care manage25 ment, which may include— 


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1 ‘‘(i) primary care; 

2 ‘‘(ii) specialty care; 

3 ‘‘(iii) pain management; 

4 ‘‘(iv) mental health services; 

5 ‘‘(v) genetic counseling services; and 

6 ‘‘(vi) other providers. 

7 ‘‘(E) Coordinating specialty care services, 

8 whether provided at the medical hub or spoke. 

9 ‘‘(F) Coordinating reproductive health and 

10 family planning services for patients with sickle 

11 cell disease, trait, or other hemoglobinopathies. 

12 ‘‘(G) Providing a dedicated sickle cell ex13 pert at the medical hub to assist in overseeing 

14 care of sickle cell disease patients at spokes and 

15 to advise the community-based organization. 

16 ‘‘(H) Educating health care providers on 

17 social determinants of health and implicit bias 

18 that may affect quality of care and life for pa19 tients with sickle cell disease, trait, or other 

20 hemoglobinopathies. 

21 ‘‘(I) Providing telehealth appointments to 

22 patients when appropriate and facilitating ac23 cess to telehealth services for sickle cell disease 

24 patients to the extent feasible. 


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1 ‘‘(J) Implementing pediatric-to-adult 

2 health care transition programs for purposes of 

3 ensuring coordinated patient graduation from 

4 pediatric to adult providers for all patients. 

5 ‘‘(K) Providing social work services or 

6 community health worker services in coordina7 tion with one or more community-based organi8 zations. 

9 ‘‘(L) Collecting and distributing data as 

10 required by the National Sickle Cell Disease 

11 Coordinating Center established under sub12 section (f) or otherwise required by the Sec13 retary. 

14 ‘‘(M) Engaging in quality improvement 

15 with respect to such standards of care for 

16 health and quality of life outcomes among sickle 

17 cell disease patients as the Secretary may re18 quire. 

19 ‘‘(2) COMMUNITY-BASED ORGANIZATION.—The 

20 community-based organization of the eligible entity 

21 shall provide or coordinate services to patients and 

22 families, which may include the following: 

23 ‘‘(A) Providing education and outreach to 

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1 uals with sickle cell trait, sickle cell disease pa2 tients, caregivers, and health care providers. 

3 ‘‘(B) Providing support in addressing so4 cial determinants of health, such as food insecu5 rity, housing insecurity, and access to education 

6 and transportation. 

7 ‘‘(C) Providing social work services or com8 munity health worker services in coordination 

9 with a medical hub or spoke. 

10 ‘‘(D) Testing or coordinating testing for 

11 individuals at-risk for sickle cell trait and indi12 viduals with sickle cell trait that increase the 

13 likelihood of having a child with sickle cell dis14 ease, including through coordination with a ge15 netic counselor. 

16 ‘‘(E) Engaging in quality improvement 

17 with respect to standards of care or health and 

18 quality of life outcomes among sickle cell dis19 ease patients, as identified by the Secretary. 

20 ‘‘(3) SPOKE.—The spokes of the eligible entity 

21 shall provide or coordinate each of the following 

22 services: 

23 ‘‘(A) Collaborating with a medical hub to 

24 coordinate and support care for sickle cell dis25 ease patients. 


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1 ‘‘(B) Providing standards of care as devel2 oped in coordination with the medical hub. 

3 ‘‘(C) Providing primary care services, ge4 netic counseling, or specialty care. 

5 ‘‘(D) Providing telehealth appointments, as 

6 appropriate. 

7 ‘‘(E) Providing medical or surgical treat8 ment. 

9 ‘‘(F) Implementing individual care plans. 

10 ‘‘(G) Providing social work services or 

11 community health worker services in coordina12 tion with one or more community-based organi13 zations. 

14 ‘‘(H) Collecting and distributing data as 

15 required by the National Sickle Cell Disease 

16 Coordinating Center established under sub17 section (f). 

18 ‘‘(4) ADDITIONAL USES OF FUNDS.—In addi19 tion to the uses of funds described in paragraphs 

20 (1), (2), and (3), an eligible entity selected to receive 

21 a grant under this section may use funds received 

22 through the grant— 

23 ‘‘(A) to identify and secure resources for 

24 ensuring reimbursement under, for the State in25 volved, the State plan under title XIX of the 


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1 Social Security Act (or a waiver of such plan), 

2 State child health plan under title XXI of such 

3 Act (or a waiver of such plan), and other health 

4 programs for the prevention and treatment of 

5 sickle cell disease, including by working with 

6 community-based sickle cell disease organiza7 tions and other nonprofit entities; 

8 ‘‘(B) to assist sickle cell disease patients 

9 with accessing appropriate health insurance, in10 cluding— 

11 ‘‘(i) through the payment of insurance 

12 premiums and cost-sharing amounts, to 

13 the extent otherwise permitted under State 

14 and Federal law; 

15 ‘‘(ii) by working with community16 based sickle cell disease organizations and 

17 other nonprofit entities; and 

18 ‘‘(iii) by helping sickle cell disease pa19 tients know their rights with insurance 

20 programs; 

21 ‘‘(C) to facilitate access to telehealth serv22 ices for sickle cell disease patients and individ23 uals with sickle cell trait, to the extent feasible; 

24 ‘‘(D) to fund evidence-based programs that 

25 provide education to health care providers, 


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1 teachers and school personnel, and correctional 

2 institutional personnel, on the care of individ3 uals with sickle cell disease or trait in health 

4 care settings and other appropriate settings, in5 cluding schools and prisons; 

6 ‘‘(E) to develop a system of social and 

7 community supports, including transportation 

8 services or travel reimbursement for sickle cell 

9 disease patients who do not have, but who need 

10 access to, in-person care with the Sickle Cell 

11 Disease Treatment Centers; and 

12 ‘‘(F) to facilitate access to sickle cell trait 

13 testing and genetic counseling. 

14 ‘‘(e) APPLICATION; SELECTION.— 

15 ‘‘(1) APPLICATION.—An eligible entity desiring 

16 a grant under this section shall submit an applica17 tion to the Secretary at such time, in such manner, 

18 and containing such information as the Secretary 

19 may require, including a description of how the hub20 and-spoke entity and community-based organization 

21 will collaborate in carrying out the activities de22 scribed in subsection (c). 

23 ‘‘(2) GEOGRAPHIC DISTRIBUTION.—The Sec24 retary shall award grants under this section, to the 

25 extent practicable, to eligible entities, with a focus 


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1 on regions where a disproportionate number of pa2 tients with sickle cell disease, individuals with sickle 

3 cell trait, or other heritable hemoglobinopathy pa4 tients per capita reside, and to eligible entities na5 tionwide so that patients can access more com6 prehensive sickle cell disease treatment services no 

7 matter where they reside. 

8 ‘‘(3) PRIORITIES IN MAKING AWARDS.—In 

9 awarding grants under this section, the Secretary 

10 may give priority to eligible entities that— 

11 ‘‘(A) include at least one historically black 

12 college or university (defined as a part B insti13 tution under section 322 of the Higher Edu14 cation Act of 1965 (20 U.S.C. 1061)) or minor15 ity serving institution (defined as an eligible in16 stitution under section 371 of such Act (20 

17 U.S.C. 1067q)) that has a medical school, nurs18 ing school, nurse practitioner or physician as19 sistant program, genetic counseling program, or 

20 school of social work; 

21 ‘‘(B) serve an area with a high prevalence 

22 of sickle cell disease; or 

23 ‘‘(C) serve a rural area. 

24 ‘‘(f) NATIONAL SICKLE CELL DISEASE COORDI25 NATING CENTER.— 


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1 ‘‘(1) IN GENERAL.—The Secretary shall estab2 lish, or enter a cooperative agreement with an entity 

3 to establish, the National Sickle Cell Disease Coordi4 nating Center, which shall coordinate the activities 

5 conducted by grantees under this section and carry 

6 out the activities described in paragraph (2). 

7 ‘‘(2) DUTIES.—The National Sickle Cell Dis8 ease Coordinating Center shall carry out each of the 

9 following activities: 

10 ‘‘(A) Advise the Secretary on the design 

11 and implementation of, and coordinate the in12 frastructure of, the Sickle Cell Disease Treat13 ment Centers established under subsection (b), 

14 including with respect to administrative require15 ments and ensuring that sickle cell health care 

16 is available across the United States. 

17 ‘‘(B) Develop a national strategy for the 

18 practice of equitable care, coordinated com19 prehensive quality care, research and resources 

20 for patients and health care providers, and 

21 treatment modality options to improve patient 

22 outcomes, and submit such national strategy to 

23 the Secretary. 

24 ‘‘(C) Coordinate with Federal agencies to 

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1 tients and routinely update a national needs as2 sessment to improve care for individuals im3 pacted by sickle cell disease. 

4 ‘‘(D) Coordinate with hub-and-spoke net5 works, patients, researchers, and health care 

6 providers to maintain a comprehensive sickle 

7 cell research, treatment, and national care 

8 strategy. 

9 ‘‘(E) Establish a rotating panel of stake10 holders, including health care providers, pa11 tients, individuals impacted by sickle cell dis12 ease, allied health professionals, care coordina13 tors, social workers, community health workers, 

14 and sickle cell community-based and advocacy 

15 organizations to advise the Center, provide up16 to-date information and forecasts on status and 

17 plans for improving sickle cell care, treatment, 

18 and access to treatment modalities for individ19 uals and families living with sickle cell disease. 

20 ‘‘(F) Coordinate and support hub-and21 spoke frameworks. 

22 ‘‘(G) Support improvement in patient and 

23 family-centered care, health outcomes, and care 

24 affordability by improving access to care. 


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1 ‘‘(H) Provide or coordinate technical as2 sistance and support to health care providers, 

3 family members and advocates, public health 

4 professionals, policymakers, and patients that 

5 want to improve access to quality care, tele6 medicine, family planning, health care transi7 tion, and family and community engagement. 

8 ‘‘(I) Inform and educate the public about 

9 sickle cell disease, sickle cell trait, and options 

10 for quality care. 

11 ‘‘(g) CDC SICKLE CELL DISEASE DATA COLLECTION

12 PROGRAM FOR SCD TREATMENT CENTERS.—The Sec13 retary, acting through the Director of the Centers for Dis14 ease Control and Prevention, in coordination with the Na15 tional Sickle Cell Coordinating Center established under 

16 subsection (f), shall carry out the following: 

17 ‘‘(1) Collecting, coordinating, monitoring, and 

18 distributing data, best practices, and findings re19 garding the activities funded under grants made to 

20 eligible entities under this section. 

21 ‘‘(2) Collecting and maintaining up-to-date data 

22 on sickle cell disease, including subtypes as applica23 ble, and their associated health outcomes and com24 plications, in consultation with States participating 

25 in the Sickle Cell Data Collection of the Centers for 


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1 Disease Control and Prevention, including for the 

2 purpose of— 

3 ‘‘(A) improving national incidence and 

4 prevalence data, including the geographic dis5 tribution of affected individuals; 

6 ‘‘(B) identifying health disparities impact7 ing individuals born with sickle cell disease, in8 cluding subtypes as applicable, and other 

9 hemoglobinopathies; 

10 ‘‘(C) assessing the utilization of therapies, 

11 comprehensive complication risk screening, and 

12 strategies to prevent complications resulting 

13 from sickle cell disease and to increase quality 

14 of life; and 

15 ‘‘(D) evaluating the effects of genetic, envi16 ronmental, behavioral, and other risk factors 

17 that may affect individuals with sickle cell dis18 ease. 

19 ‘‘(3) Developing educational materials, public 

20 awareness campaigns, or other outreach programs 

21 regarding the inheritance pattern, treatment of, and 

22 prevention of complications from sickle cell disease 

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1 dividuals living with sickle cell disease and sickle cell 

2 disease trait. 

3 ‘‘(h) REQUEST FOR INFORMATION.—Not later than 

4 180 days after the date of enactment of the Sickle Cell 

5 Disease Treatment Centers Act of 2024, and in advance 

6 of each new grant cycle thereafter, the Secretary shall 

7 publish in the Federal Register a request for information 

8 seeking feedback from stakeholders on— 

9 ‘‘(1) best practices with respect to the establish10 ment and implementation of Sickle Cell Disease 

11 Treatment Centers; and 

12 ‘‘(2) any other information that the Secretary 

13 may require. 

14 ‘‘(i) REPORT TO CONGRESS.— 

15 ‘‘(1) IN GENERAL.—Not later than 3 years 

16 after the date of the enactment of the Sickle Cell 

17 Disease Treatment Centers Act of 2024 and every 5 

18 years thereafter, the Secretary shall submit to the 

19 Committee on Health, Education, Labor, and Pen20 sions and the Committee on Appropriations of the 

21 Senate and the Committee on Energy and Com22 merce and the Committee on Appropriations of the 

23 House of Representatives a report on the impact of 

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1 lished under this section on health outcomes for 

2 sickle cell disease patients. 

3 ‘‘(2) REPORT ELEMENTS.—The report de4 scribed in this section shall include— 

5 ‘‘(A) a summary and description of eligible 

6 entities operating a hub-and-spoke system that 

7 are receiving grant funds under this section; 

8 ‘‘(B) information about the specific activi9 ties supported by grant funds awarded under 

10 this section with respect to each eligible entity; 

11 ‘‘(C) the number of sickle cell disease pa12 tients served by grant programs funded under 

13 this section and demographic information about 

14 those patients, including race, sex, gender, geo15 graphic location, and age; and 

16 ‘‘(D) information about patient experiences 

17 with the hub-and-spoke system and community18 based organizations. 

19 ‘‘(j) SUPPLEMENT, NOT SUPPLANT.—The activities 

20 under this section shall supplement, not supplant, other21 wise authorized activities of the Department of Health and 

22 Human Services relating to sickle cell disease. 

23 ‘‘(k) AUTHORIZATION OF APPROPRIATIONS.— 

24 ‘‘(1) IN GENERAL.—To carry out this section, 

25 there are authorized to be appropriated such sums 


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1 as may be necessary for fiscal year 2025 and each 

2 fiscal year thereafter. 

3 ‘‘(2) ALLOCATION TO ACTIVITIES.—Of the 

4 amount appropriated under paragraph (1) for a fis5 cal year— 

6 ‘‘(A) 70 percent may be awarded to eligible 

7 entities for purposes of supporting the activities 

8 of hub and spoke networks that are a part of 

9 such eligible entities; 

10 ‘‘(B) 20 percent may be awarded to eligible 

11 entities for purposes of supporting the activities 

12 of community-based organizations that are a 

13 part of such eligible entities; 

14 ‘‘(C) 5 percent may be used for the estab15 lishment and maintenance of the National Sick16 le Cell Disease Coordinating Center described 

17 in subsection (f); and 

18 ‘‘(D) 5 percent may be used for the activi19 ties of the Sickle Cell Data Collection program 

20 of the Centers for Disease Control and Preven21 tion described in subsection (g).’’. 

Æ 


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